Thursday, July 21, 2011

This week in particular, a year ago, was a huge turning point for our family.

Where most couples are focusing, remembering and celebrating those common dates like birthdays, anniversaries or a first date with that special someone we recall this week in July, 2010.

On July 4, 2010 I had a bit of a screaming match with God in the parking lot of Winnie Palmer Hospital. I was frustrated, angry, sad, desperate, guilty and becoming impatient. It was also the day I realized I wasn't pulling the strings. And that the almighty miracle wasn't going to happen. It was a day I asked for something to happen, anything. I needed to move forward and see how this situation was going to play out for our family. We had spent 3 months in the NICU in Orlando and went up and down on the oxygen like a yoyo. But it was clear from that day forward God heard me.

For the next three weeks Wrenn steadily went downhill and needed more and more oxygen. On Sunday, July 18th, Wrenn was intubated and the gate opened to qualifying for an evaluation in St. Louis, Missouri. Things moved fast and even though I had been told what would come, I wasn't prepared, mentally or physically. I wasn't even sure Wrenn was stable enough to make the flight. Four days later, the team from Children's flew to Orlando and took my baby away and from that point on, we were all entering the unknown.

We left that morning just before the team arrived (on the advice of Wrenn's doctor) and started out on a 17 hour road trip. Tanner was snuggled in the back seat with Buzz and about 10 DVD's. I nervously held my phone and spoke to the doctors as they updated us on Wrenn's condition when she landed in Missouri. It was the most nerve-wracking drive of my life.

Being told by the transportation team that Wrenn was a 'memorable' patient because she had been blue for the entire trip wasn't the welcome we wanted to hear but now that I reflect a year later, I am amazed as much as everybody else is with my daughter's progress.

"Do you want more, Wrenn?" I asked my little princess tonight at dinner. She crinkled up her nose and used the 'more' sign signal and gladly took another bite of yogurt. When she was done eating she got herself out of her high chair and then took her walker over to Tanner, smiled at him and started playing with a toy that he was playing with. "Mine," Tanner snapped. I do as I always do and watch and teach and thank God for what I'm seeing in front of me. Two great kids. Two miracles. And a happiness that I feel almost every moment of each day because I know it could have gone either way.

Wrenn's bronc results yesterday were the best news of the year! No rejection. I don't think anybody could believe it, even though she's doing awesome, she's still such a feisty little mystery at times. I watch as her transplant coordinators and doctors shake their heads in Clinic in her amazement of stomping her feet on the table, giggling, signing, and throwing everybody kisses. The entire story is mine to tell and I really have times that I don't even believe it.

Last week Wrenn had her six month evaluation with her therapists and I couldn't believe how much progress she has made in that short of time. I remember when I was in the hospital all those months thinking that I was missing out on seeing her develop and it saddened me. What I realized at that meeting was that I didn't miss a thing! I watched her roll over, sit up, smile, coo, learn to eat, get new teeth, toss a ball, crawl, laugh out loud, steal her brother's toy and run off, and walk. I've seen it all and in a very short time. Day to day I don't analyze her progress; I just live each day.

I can tell you, a year ago this week, Tanner got his first Buzz doll and now he's got at least 12 more in some form. His Toy Story collection ranges from blankets, book bags, and videos to Halloween costumes. Toy Story was a huge comfort to him and I don't think we'll ever forget how his buddy was there for him during our crisis. I'd be naive to say he wasn't affected by everything he's been through. A recent therapy session at Children's revealed he's very stressed and needs more security in his life. Some stress comes from a sibling arriving and some from being uprooted over night to a new place with new people. Kids are resilient as Wrenn has shown but often times the trauma comes out later. So we are take him swimming on the weekends and trying to do more one on one time. Overall he's doing great and is a wonderful big brother. It's hard to believe when Wrenn was born, he was just 2.5 years old. Such an impressionable age. Now he's 3.5, nearing four and challenging us in all the normal ways right now.

I realized at one point that things were starting to turn around for our family and I thought about how to give back. Like... telling friends and family to donate to their local Ronald McDonald house to help other families in need. There's nothing worse than living the hospital life away from home. My friends have been there for me since the beginning and sending us DVDs, care-packages, cards, emails, and toys for Tanner was just the most awesome thing in the world. Especially when you're out of sorts and in a new surrounding.

I have made so many new friends here in St. Louis. Many people continue to ask how Wrenn's doing. They of course always want to see how Tanner-Bug is doing as well. Each person asks and genuinely wants to know how we're doing in general.

I am told that Wrenn won't have another bronc until late October, early November since this last one came back clean. This is a relief to know she's doing great and to know we don't have to do another one for several months. Hopefully she'll continue to grow, thrive and stay healthy!

Wrenn's Baby Breath Fund

Click here to DONATE through the National Transplant Assistance Fund. Any help you can give will go directly towards Wrenn's medical expenses. Thank you!

Wrenn's Story

Wrenn was born on April 14, 2010. She was a little early, but not alarmingly so, and at 18 inches long and just under six pounds she was pink and pudgy and looked to be the picture of newborn health.

Unfortunately, Wrenn quickly developed breathing difficulties and needed full-time oxygen or her little lungs would collapse. Doctors suspected that Wrenn might have a rare genetic disorder called Surfactant Protein Deficiency.

Shortly after her birth a series of tests were run, and on her one month birthday her parents found out that Wrenn does, indeed, have the incredibly rare genetic disorder known as ABCA-3 Surfactant Protein Deficiency.

Wrenn needed new lungs and in September 2010, two months after her family relocated to St. Louis, she received a double lung transplant.

This site has been created as a space for Wrenn's family to keep friends and family updated on Wrenn's progress. She's a fighter, so we expect lots of updates!

Wrenn's parents have good health insurance, but they're still going to have huge medical bills to deal with, so we hope that anyone who can will donate to Wrenn's Baby Breath Fund using the NTAF link above.